My Journey with Tiara, week 11

We have been in the ER for almost 4 hours and the doctor thinks Tiara has finally stopped seizing. I am watching her closely, looking for any slight movement indicating the seizure has not stopped because I am not convinced it is over. That is when Lou and I notice a flicker on her eyelids. Am I imaging the movement? Every few minutes they so slightly move, even though her eyes are closed. It seems as if her eyeballs are moving side to side underneath her closed lids. Is that possible? I call for the doctor and he watches her with me. He too sees the same movement I have been seeing and then we notice her lips twitch slightly. Ohhh, she is still seizing. Why won’t she stop? How long can a person seize without suffering brain damage? Will she ever be able to wake up after being pumped full of drugs for 4 hours straight? It takes two more doses of the Dilantin/Valium combo until she finally stops. I sigh every time I watch them them push more drugs through her IV, praying this will be the last dose. Please let this dose work, please let it be the last one. Finally she stops. Now what?

She is transported to the Intensive Care Unit at Choc once again. They tell us she will remain in the ICU until she wakes up from the coma and can breathe on her own. At that time they will extubate her and hopefully she will not have suffered any damage from the emergency intubation, prolonged seizure or extreme doses of medications. As we ride in the ambulance to Choc, it dawns on me that my chest is in serious pain. Or to be more honest, my boobs are as hard as rocks because I haven’t breast feed Trinity in over 8 hours. Trinity is 4 months old and normally feeds every couple of hours. I have never been able to pump my breast milk, so I have no back up supply in the freezer, nor do I have a way to relieve my pain. I know my Mom will find the emergency can of formula and the few bottles I keep on hand for Trinity, so I know she will survive without me but I am not sure how I am going to survive without her. My Mom could drive her up to the hospital to feed, but she can’t do that every 4 hours and Trinity isn’t allowed in the ICU so I decide right then and there we will both have to wean old turkey. This is really going to suck for both of us.

Every time Tiara is hospitalized our family goes into “hospital mode”. During the months leading up to this seizure, I actually kept a bag packed for us both as I knew another trip to the hospital was inevitable. The problem was that our normal ” hospital mode” routine had to be significantly altered because so much had changed in the last month. Lou had just taken a new job as General Sales Manager at BMW, selling a brand new type of car, which he knew nothing about. He also had never been a General Sales Manager before so he had to learn all new responsibilities and he was working for a completely new set of people and a new company, which had a very different philosophy than his prior job. Pretty much everything he once knew was now different, so he was more stressed than I have ever seen him in our life together. He was working 7 days a week and was terrified of taking a day off or he might fall behind, and then TT had this seizure. He wanted to be at the hospital or at home with the girls but did not feel comfortable taking time off work when he just started the job 3 weeks before. If he didn’t work, we didn’t live, so really he had no choice.

My sister who usually sat bedside with me at the hospital had just given birth to her first child 2 weeks before this all happened. Lou’s mom was working in Northern California and had taken off 10 days for our trip to Hawaii, so she also couldn’t just leave her job and come help right away. Luckily, Louie’s Aunt Connie offered to come help and flew in the next morning. My Mom had to do all the driving for Tabitha and help Connie with Trinity. At that time, the ICU at CHOC was like an Emergency room. Most of the rooms were not really even rooms, they were small spaces separated by a curtain. Because Tiara was so sick, she did get one of the rooms that had real walls, which was nice because it was much quieter. I remember just sitting in a chair, staring at her for hours on end waiting for her to wake up. It was so quite, except for the swooshing from the ventilator. We weren’t allowed to use cell phones in the hospital back then and texting didn’t exist, so there was nothing to do but read, but I was too stressed to read. In addition, only two visitors at a time were allowed so if family came to visit, they had to take turns. I literally just sat there and stared at her day after day. By the third day I was in so much pain, I could barely move. The nurses started to notice how much pain I was in and offered to bring me a breast pump, but I declined. We had both already made it 3 days, I didn’t want to start over again. A nurse then asked a doctor to give me some medicine to stop my milk from coming in, but he said he couldn’t do that, I would have to see my own doctor. Well that was impossible since I refused to leave the hospital, so the nurses helped me bind myself up with blankets to help with the pain. I looked like a freak with a blanket tied around my chest. When the doctors came in to talk about Tiara’s condition, they would look at me in my tied blankets rather odd, but whatever.

By the 6th day she started to move a little, which was so good, but she had developed a pneumonia. The problem with being on a ventilator is that once you start to wake up from the coma, the tube in your throat is really irritating and can be painful. Also since she had a bunch of phlegm from the pneumonia, she couldn’t cough it all the way out herself so they had to suction it out which is really horrible and seemed super painful. Tears would come out of the corner of her eyes whenever they suctioned her.

The doctor decided it was time to take her off the ventilator but she wasn’t totally awake. I was so scared that when they took it out she wouldn’t be able to breathe on her own and then they would have to put it back in. I guess they knew what they were doing but I remember not feeling really confident and was not impressed with the respiratory therapist extubating Tiara. Luckily, she was fine and after 7 days in the ICU we got moved up to the 4th floor. So much better. The neurologist taking care of her during this visit, was new to CHOC and was really good. He decided to put Tiara on Depakote because it is the strongest anti-epileptic and very old school, but very effective. The side effects weren’t great; weight gain, extra facial hair, damage to the liver, nausea, early puberty, and the list goes on but she didn’t have a choice. She was discharged on her 10th day in the hospital and I will never forget what her neurologist said to us just before we left.

He told us about the Tuberous Sclerosis patients he had cared for in the state mental institution who had lived there their whole lives. This seemed so sad to think of a child like Tiara living without the love of their parents on a daily basis. It must be so hard to have seizures everyday and then to be taken care of by people who didn’t love you? It was really horrifying to me. He then went on to say,

” I just want you to know, Tiara will have another status seizure, that requires her to be put in a drug induced coma. I have seen patients like Tiara and this will happen again, but next time she may not be so lucky!”

What, I was stunned. How could he know that? Why was he telling us this when we were finally feeling like she was in the clear? I remember hating him right then and there. Everything about him instantly repulsed me. Who the hell did he think he was telling me the future? No doctor had ever given us any prognosis on Tiara’s condition, because it was so unknown and this guy is telling me this was going to happen again, without doubt? What if she didn’t survive next time? What if they couldn’t stop the seizure?

I have heard his words in my head over and over again for the last 8 years. They have replayed themselves every time she has a seizure that lasts too long. I wonder, is this the “next time”? Will this seizure not stop?

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hi, I’m tiffani

Nothing fake or phony as I blog about my life as a mother and wife dealing with one daughter's daily seizures, autism, mental delay, violence and numerous other medical problems, while trying to raise the other two in a healthy, happy environment. I hope my blog will make you laugh, cry and think about real life issues every time you read a post.